Follow-up: Adult with Down Syndrome (36F) – post-traumatic seizures, meds update, and an offer to other caregivers

Hi everyone,

A few weeks ago I posted here about my 36-year-old sister with severe Down Syndrome who is nonverbal and fully dependent. She had a head injury about 3 years ago and since then has had recurrent seizures. That earlier post is here for context:
https://www.reddit.com/r/downsyndrome/comments/1ouxp54/adult_with_down_syndrome_36f_posttraumatic/

Since that post, a few things changed:

• She is now on two anti-seizure medicines:
  • Levetiracetam (Levipil) 750 mg twice daily
  • Lacosamide 100 mg twice daily Both are crushed and given with food because she can’t swallow tablets or XR forms.
• She recently had a seizure after 27 days seizure-free, on the first day of her period, with a lot of sleepiness and dizziness afterwards.
• Our neurologist added lacosamide so we don’t have to rely on benzodiazepines long term. We’re still watching side effects like drowsiness and balance, and adjusting slowly.

I’m not a doctor and I won’t give anyone medical advice.
But I am:

• A brother who has watched his parents in their 60s still doing full-time care
• Handling meds, logs, hospital visits, and the emotional fallout
• Married to someone who’s also carrying this with us

If you’re caring for an adult with Down Syndrome, especially nonverbal or with seizures, and you just need:

• Someone to listen
• To compare routines, questions to ask doctors, or how to cope on bad days
• Or just a reminder that you’re not the only one feeling exhausted / angry / guilty

my DMs are open.

You’re not alone in this, even if it feels like it most days.